Gluten: worth avoiding?

Dr Nancy Klimas made an almost throw-away comment during the 26 January INIM conference, that PWME should try a gluten-free diet for a few months to see if it helped and that tests for gluten sensitivity could give false negatives (I forget whether she said if only certain patients should try this such as people with GI issues - so don't just take my word for this!). I forget even which presentation it was in. But she said that we should be doing everything we can to reduce inflammation.

During my first illness I went on an exclusion diet. It made absolutely no improvement to any of my symptoms (I had no GI symptoms). However, when I reintroduced bread, I felt a lot worse. I stayed off it long term and reintroduced it some years later, once I was in remission (which was some years after the exclusion diet started so that can't claim the credit).

Now that I'm sick again I haven't wanted to exclude stuff again for no apparent benefit. However, Dr Klimas's comment has got me thinking that I should be trying to decrease my inflammatory load.

Gluten seems to be a topic that involves a lot of strong feeling. I'd like to get some good info on the issues but don't know which sources to trust. A bit of googling turned up a fair amount of ranting and people trying to sell their books.

Can anybody point me at a layperson's summary of current thinking and evidence by somebody reputable?

This guy talks interestingly about 'FrankenWheat', for example, but I've no clue if what he's saying would be accepted by other knowledgeable scientists:

I'll tell you what my GP told me when allergy tests came back negative, even though my body was swollen from eating gluten and some other foods: If you feel better not eating it, then don't eat it.

In my case the reaction I get is noticeable swelling that can be excruciatingly painful in my back joints for an hour or two. But other foods might just make my stomach itch a bit when I eat them. I keep an eye on the itchy foods, but still eat them from time to time without worrying about. Cutting them out of my diet makes no difference that I've noticed. But I avoid the intense pain-causing foods like the plague.

Screw the science and rationality and theories Go with what feels better.

Theglutenfile is a file of all the current info on gluten. Cara has kept this up for at least the last 6 years. Favorite authors include Dr Davis, Dr Hadjivassilou (SP?) and Dr Ford.

As for the ranting ... ... gluten can be addictive so gluten addicts aren't happy if you mess with their addiction.

And then there are those who don't want the public to catch on to what kind of Frankenfoods we're eating because if we do the medical profession and big pharma are going to lose out.

I don't know what to think of Dr Klimas. The NIH stated years ago that celiac disease / gluten intolerance was being misdiagnosed as CFS. I found this on the NIH celiac info site back in 2006. Eliminating toxins is a no brainer for canaries ...

Dr Klimas was talking about reducing inflammatory load - ME is a disease of inflammation of a lot of our systems, apparently, so it made sense to me that anything to bring it down was a good thing. I don't think she was implying that ME was misdiagnosed gluten intolerance.

Thanks for the info - how to know what's what, though? This seems to be an area of claim and counterclaim (as is often the case with dietary measures).

She should know that celiac disease / gluten intolearnce is often misdiagnosed as CFS. The NIH had what they called a campaign several years ago to make the medical profession aware of celiac disease / gluten intolerance. It's on their celiac website.

It appears not many in the medical profession got the memo ... tc ... x

NIH Launches Celiac Disease Awareness Campaign for Health Care Providers and Public
The National Institutes of Health (NIH) today announced the launch of a campaign to heighten awareness of celiac disease, an autoimmune disorder that interferes with the absorption of nutrients from food. The campaign stems from consensus recommendations of an independent panel of experts convened by the NIH to assess current diagnosis, treatment, and management of the disease.

“We now know that celiac disease is more prevalent that previously thought — affecting nearly 1 percent of the U.S. population — and remains under-diagnosed,” said Griffin P. Rodgers, M.D., acting director of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), the NIH institute leading the effort. “Through the campaign, we hope to increase physician awareness of the disease, resulting in earlier diagnosis and better outcomes for celiac patients.”

Developed by the NIDDK, with coordination among the professional and voluntary organizations working on celiac disease, the campaign offers materials and resources for health professionals and the public about the symptoms, diagnosis, treatment, and management of celiac disease. The campaign offers fact sheets, booklets, practice tools for health professionals, NIH research information, and resources from professional and voluntary organizations that focus on celiac disease.

Celiac disease is an autoimmune response to gluten, a protein found in wheat, rye, and barley. Symptoms of celiac disease range from gas, diarrhea, and abdominal pain, to delayed growth, certain skin rashes, infertility, and osteoporosis. Treatment for celiac disease is adherence to a gluten-free diet.

“One of the challenges with celiac disease is the vast array of symptoms associated with the disease,” said Stephen P. James, M.D., director of the Division of Digestive Diseases and Nutrition (DDN) at the NIDDK. “We are hoping to educate health professionals and the public that celiac disease is not only a gastrointestinal disease.”

The NIDDK, part of the National Institutes of Health (NIH), conducts and supports research on diabetes; endocrine and metabolic diseases; digestive diseases, nutrition, and obesity; and kidney, urologic and hematologic diseases. Spanning the full spectrum of medicine and afflicting people of all ages and ethnic groups, these diseases encompass some of the most common, severe, and disabling conditions affecting Americans.
The National Institutes of Health (NIH) — The Nation's Medical Research Agency — includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. It is the primary federal agency for conducting and supporting basic, clinical and translational medical research, and it investigates the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit www.nih.gov.

As a result, celiac disease has long been underdiagnosed or misdiagnosed. As doctors become more aware of the many varied symptoms of the disease and reliable blood tests become more available, diagnosis rates are increasing.

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I figured out the importance of going gf by going to celiac dot com and reading what the members posted about their symptoms.

The medical profession is just beginning to acknowledge that gluten can damage other parts of the body besides the celiac section of the digestive tract despite knowing that celiacs are prone to other symptoms, including gluten ataxia, diabetes and hashimotos.

Dr Frakenwheat is making the media rounds to sell his book. I heard his interview on 'Q' (a radio program on CBC Radio One) a few days ago. He made all kinds of breathless hysterical statements about how non-GMO wheat varieties have been modified by plant breeders "using techniques even more dangerous than GMO" into the most dangerous food that anyone could possibly eat. His rant was totally devoid of evidence or details. He didn't even tell us what sort of horrible techniques the plant breeders are using - too shocking for genteel radio listeners, apparently.

There seems to be a big anti-gluten fad right now in the U.S. ...zzzzzzzz...

I didn't start walking normally ( I had ataxia dx via rhomberg for 16 1/2 years) until I'd been GF for one year so I'd give it at least that long for damage to resolve. Dr. Hadjivassilou (sp?) recommends that his patients give it a year.

Also, my brain had white lesions on it that disappeared too but I don't know exactly when. This is widely known in the MS online communities. Not so much by those who just listen to their doctors tho.

FWIW, you really don't need to buy anyone's books to learn about gluten. It's all on the web now. tc .. x

I didn't start walking normally ( I had ataxia dx via rhomberg for 16 1/2 years) until I'd been GF for one year so I'd give it at least that long for damage to resolve. Dr. Hadjivassilou (sp?) recommends that his patients give it a year.

Also, my brain had white lesions on it that disappeared too but I don't know exactly when. This is widely known in the MS online communities. Not so much by those who just listen to their doctors tho.

FWIW, you really don't need to buy anyone's books to learn about gluten. It's all on the web now. tc .. x

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V. interesting that you got such a major improvement in a year. How long did it take you to notice a difference?

I noticed that I wasn't bouncing off the walls within 24 hours. My narcolepsy went away in 7 - 10 days.

I had brain zaps and buzzing all the time that went away within the first year. Most of the symptoms I had were being discussed on the celiac dot com forum in 2005. That's where I first heard about leaky gut too.

I need to add that I eliminated all common food intolerances and most chemicals at the same time. But it took me awhile to get it right. I was still eating some gf processed foods and getting cross contaminated. I just started removing other toxins from my environment, like toxic washing powder and dish soap, last year.

My traditonal GP at that time told me how foods could be causing all of my symptoms. It was a program called LEAP that she'd used on some of her other patients and her sister. Sadly when I had such a GREAT response she started acting weird, threatened to send me to a psych for researching gluten, CFS, toxins, etc on the web so I fired her.

The reason I added that I didn't just eliminate gluten is that I react to other foods and chemicals too becuase I have leaky gut and am afraid if I hadn't eliminated them at the same time thus reducing my CYTOKINE load, I may not have responded so well. It could be that I reset something ( Methylation ? ) so my body could heal itself.

I deduced over the years that gluten was causing most of my neuro reactions because I have the DQ2 gene and I know I get some nuero reactions from gluten cc. Dairy causes shiners but nothing else. No digestive problems even. Soy causes phlegm in my throat within minutes. Tomatoes and bacon cause Fibro pain. Etc etc ...

Did you see that article on prohealth a few years ago about CFS and cytokines ? It explains how we need to reduce our cytokine load. If you google CFS cytokines prohealth it's still there ...

My GPs reaction wasn't that different from my other doctors reactions to learning what gluten had done to me. I was shocked that they didn't make a big deal out of it when I started walking normally ... That was back in Sept 2006 and I'm still walking normally.

9 years ago I was having bad symptoms, brain fog being the worst. Going gluten free seemed to make no impact at first however it's tricky to get it right and I tired again - brain fog disappeared and I gradually began to exercise. I even went to the gym. Gave me my life back for quite a few years until excess exercise caused a very severe relapse.

Everyone with "ME"" should have a coeliac blood test as the symptoms can be similar. However if the test is negative it's still worth trying. Done properly a month will tell you - you'll feel bad when reintroducing if it's a problem for you.